Social Inclusion of Children Wearing a Cochlear Implant

Gabriella Constantinescu, Aleisha Davis, Rebecca Phillips and Dimity Dornan

10th Anniversary: Cochlear Implantation in Armenia

First Voice: Who are we?

Established in 2010 in Australia The National Voice for member Centres whose

primary focus is the provision of listening and spoken language to children with hearing loss (HL)

5 Centres in Australia 1 Centre in New Zealand

First Voice: Who are we?

Aims: To improve the speech, language, social,

cognitive and academic development of children with HL

To improve the support families receive To raise awareness of early childhood HL To advocate for evidence-based early

intervention listening and spoken language services for children with HL

First Voice: Who are we?

First Voice Centres Have the largest cohort of children with HL in

the world, supporting more than 1,000 children with HL About 720 children are in early intervention About 40% of children have a cochlear implant

Are actively involved in a wide range of research relating to HL

Background: Why social inclusion?

Social inclusion is a common focus of pediatric early intervention and for First Voice

It is identified as a desired outcome in key policy documents: The Australian National Disability

Agreement United Nations Convention on the

Rights of Persons with Disabilities

Background: Why social inclusion?

Social inclusion (SI) may be influenced by the child’s communication mode, speech and language skills

Percy-Smith et al. (2008); 167 children with CI Higher level of SI = exposed to spoken language

alone than spoken language & supportive signs or spoken language & sign language

Association between higher level of SI and clear speech production, good speech understanding & a large vocabulary.

Background: Why social inclusion?

Hadjikakou et al. (2008); 69 children HA & CI Oral communication skills suggested as causal

factors in academic inclusion of children with HL exposed to spoken language

Further large scale studies needed to quantify these findings and look at the impact of early intervention on SI for children with HL.

Background: Why social inclusion?

Barriers to measuring SI Varying indicators of social inclusion are used across

diverse fields, such as economics, education and health

There isn’t a common understanding of the conceptual underpinnings of SI and approaches to measurement

Without a common understanding it is difficult for organisations to benchmark and monitor the efficacy of their services in relation to this outcome.

Literature review

Aims: To develop a model for defining and

evaluating social inclusion.

Method: Searched electronic databases and

websites Search terms: social inclusion,

participation, children, disabilities.

Literature review findings

New Social Inclusion Definition SI refers to the connectedness of the individual

with their social setting rather than their ‘presence’ (Phillips, Hogan & Dornan, submitted)

Literature review findings

The 5 Faces of social inclusion: Personal independence and self-

determination Health and access to services Education Interacting with society and fulfilling

social roles Economic participation of the parent

ChoiceWellbeing Independence

Literature review findings

The 5 Faces of social inclusion: Personal independence and self-

determination Health and access to services Education Interacting with society and fulfilling

social roles Economic participation of the parent

Health and disabilityCommunity resourcesHousingSocial accommodation

Literature review findings

The 5 Faces of social inclusion: Personal independence and self-

determination Health and access to services Education Interacting with society and fulfilling

social roles Economic participation of the parent

Education participationEducation and skills

Literature review findings

The 5 Faces of social inclusion: Personal independence and self-

determination Health and access to services Education Interacting with society and fulfilling

social roles Economic participation of the parent

Social networksSocial participationAcceptanceRole functioning and

acceptanceBehaviourSocial resources

Literature review findings

The 5 Faces of social inclusion: Personal independence and self-

determination Health and access to services Education Interacting with society and fulfilling

social roles Economic participation of the parent

Work participationMaterial/ economic

resources

Applying the 5 Faces model

The 5 Faces can be used as a model to guide the selection and development of surveys to address the breadth of social inclusion

Example First Voice wanted to benchmark the social

inclusion of their children to provide evidence for listening and spoken language service delivery

Focused on 2 Faces: Education; and Interacting with society and fulfilling social roles

Applying the 5 Faces model

Example Developed an online survey for parents to

complete about their child’s social inclusion Questions addressing the 2 Faces were selected

from a national survey – the Longitudinal Study of Australian Children (LSAC)

This allowed benchmarking of the findings against this national dataset

Preliminary findings

78 parents of children aged 4-5 years completed the survey Mean age = 4.9 years Male (n= 43), Female (n=35) All children had a permanent bilateral HL, were

optimally aided (hearing aids and/or cochlear implants) and were enrolled in a listening and spoken language program for a minimum of 6 months.

Preliminary findings

EducationParents of children with HL were less likely to be ‘very satisfied’ with their child’s education program, and more likely to be ‘satisfied’ (p=0.05)It is quite likely that this is due to parents being less satisfied in communication they receive from the teacher about their child’s progress (p=0.05)

Children with HL were less likely than their peers to spend 10+ hours/week in an education program (p=0.00)This may be because parents are instead spending time with their child in a language enriched environment (in keeping with the FV philosophy)

Preliminary findings Interacting with Society and Fulfilling Social Roles Children with HL had a similar level of SI as their hearing peers, if not better, e.g. children with HL were more likely to have been

involved in recreation and leisure activities at home over the previous week, such as reading a book, (p=0.004), or playing with toys or games (p=0.02).

These outcomes may be seen due to guidance parents receive in early intervention and parents encouraging participation in these activities to improve speech and language

Take home messages

Need to consider more than just the activities the child is involved in and their friendships

The 5 Faces model can be used to guide the development of surveys to benchmark social inclusion

Findings from the First Voice Social Inclusion study will be made available in early 2014.

Acknowledgements

Telstra Foundation Social Inclusion Grant All First Voice Centres and participants This presentation uses unit record data from

Growing Up in Australia, the Longitudinal Study of Australian Children (LSAC). The LSAC study is conducted in partnership between FaHCSIA, AIFS and the ABS. The findings and views reported in this paper are those of the author and should not be attributed to FaHCSIA, AIFS or the ABS.

References Commonwealth of Australia. (2009a). Social inclusion: A compendium of social inclusion

indicators. Canberra: Social Inclusion Unit, Department of the Prime Minister and Cabinet Retrieved from http://www.socialinclusion.gov.au/sites/www.socialinclusion.gov.au/files/publications/pdf/compendium-of-si-indicators.pdf.

Council of Australian Governments. (2009). National Disability Agreement. Canberra: Council of Australian Governments Retrieved from http://www.dhcs.act.gov.au/__data/assets/pdf_file/0019/103942/National_Disability_Agreement.pdf.

Hadjikakou, K., Petridou, L., & Stylianou, C. (2008). The academic and social inclusion of oral deaf and hard-of-hearing children in Cyprus secondary general education: Investigating the perspectives of the stakeholders. European Journal of Special Needs Education, 23, 17-29.

Percy-Smith, L., Jensen, J., Caye-Thomasen, P., Thomsen, J., Gudman, M., & Lopez A. (2008). Factors that affect the social well-being of children with cochlear implants. Cochlear Implants International, 9(4), 199-214.

Phillips, R., Hogan, A., & Dornan, D. (submitted). The five faces of social inclusion: Concepts of social inclusion theory and its measurement in children with disabilities.

United Nations. (2006). Convention on the rights of persons with disabilities and optional protocol. New York: United Nations Retrieved from http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf.